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Diabetes support

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6 replies

thequickbrowndog · 07/08/2024 22:45

Type 1 diabetic of 20 years. Last time I saw a specialist was when I was pregnant, daughter now 8!! Have asked previous gp repeatedly to refer me to hospital as I'm suffering with dawn phenomenon and finding it impossible to control. I have never heard back from the hospital. Now at a new surgery, have asked and asked to see the diabetes dr they have there, still on the waiting list. Over a year now I've been on the list. GP keeps saying he will try to get me seen asap but it hasn't happened yet.
Got the email address of local diabetic nurses from my pharmacist. I emailed asking for help or just advice, got no reply.
What on earth do I do now??

OP posts:
Walkacrossthesand · 07/08/2024 23:01

I'm really surprised - type 1 means you'll be on insulin, and there have been all sorts of developments in insulin, testing, etc over the past 10 years. Who's issuing your prescriptions? What about your annual (at least) blood tests, and eye screening?

If none of this is happening (which beggars belief if so), escalate it - there will be an LMC (local medical committee) which oversees GP services, and a CCG/ICB which is responsible for health care provision. Track them down on the internet and get them on the case!

Walker1178 · 08/08/2024 21:17

Fellow T1D here. GP’s just don’t seem to understand but I’m shocked you’re not under the care of a diabetic team. Keep advocating for yourself, phone every day, you need to get an appointment. My practice is really hot on chasing if I haven’t seen them. I wasn’t particularly managing well when I had my last annual checks and got put on a call rota every 3 days to get my numbers back to where they should be. I’m MDI
but it might be worth you pushing for a pump if you’re struggling. Don’t give up x

LizzieBennett73 · 08/08/2024 21:26

Is going private an option, OP? It may be quicker to ask for a private referral to an Endocrinology consultant or see if your local Nuffield/Winfield offers a service. DH went private initially for Cardiology but once he'd had tests done and a consultation, he went back into the NHS system.

Oblomov24 · 04/10/2024 13:40

Blimey, I've only ever been under the consultant at the local hospital, all my life. I'd complain to practice manager, and ask for referral to hospital consultant of diabetic clinic.

I've been on a pump for nearly 25 years now, cgm, my own pump specialist nurse I can email anytime, and annual consultant review at the hospital. You should be getting similar. Please push.

taxguru · 12/10/2024 14:23

You really need to push your GP practice, and make a formal complaint to the practice manager if necessary.

I'm not T1, but I've been T2 for 25 years. At first, the surgery was really good. I had a brilliant couple of diabetic nurses I saw every six months for HBA1C and other monitoring and had a couple of consultations with their specialist diabetic GP.

Then it changed after about five years. The six monthly checks turned into yearly. It became HCA's who did the checks of feet, BP, blood test etc., A random "proper" nurse (not diabetic specialist) would phone up a week or so afterwards to tell me the HBA1C result and we'd have a very brief chat - usually her saying the usual spiel of the NHS factsheet, i.e. avoid mangoes etc!!

After a few years, of that being barely called "management", I started getting texts from the "nurse" after the HCA appointment, usually just a quick 2 line curt message of HBAIC satisfactory, not saying the level. So, I kind of lost interest myself, year after year, I was being "told" the HBA1C was "satisfactory" without knowing the level, and my home finger prick testing was OK when I rarely did it (never double digit 2 hours after food etc). So I basically started to forget about it.

Then came covid, and I had no testing at all for nearly two years as the surgery suspended all routine monitoring!

Then in 2022, had the usual annual HBA1C and the usual curt "satisfactory" text a week or two later. But my finger prick testing had gone crazy - double figures, very high pre-breakfast figures. So I contacted the surgery and asked for the HBA1C reading - it was a whopping 8.7!! (previous ones I'd known about were under 7, mostly under 6, as I was on drugs for it). I asked to speak to a diabetic nurse, but the receptionist refused as the GP had marked it down as "satisfactory" and told me I wasn't "entitled" to see a nurse for no reason!!

I later had a consultation with a GP for a different issue and I asked him to look at the HBAIC. He said it was far too high and made me an appointment with a diabetic nurse the following week. Then I finally started to get some action and support! Firstly, increased the drugs. Then some realistic diet/food/exercise ideas - she was really good! HBAIC tests every month for a few months to monitor and ensure it was coming back under control. She's said a few times, that she couldn't understand how I'd got so out of control despite being under their "management". As others have said, normal GPs don't seem to have a good understanding of diabetes anymore. The nurse once showed me the graph of my HBA1C readings on her screen and it showed a gradual rise every test/year, but just never picked up!!

Even better, as I made such good progress, both in terms of HBAIC and weight loss, I've now been temporarily put on a Libre constant monitoring system which is an absolute game changer and something I'd highly recommend to anyone. It gives me the tools to experiment with food and exercise, timing of meals, timing of drugs, etc., and my HBAIC is now down below 5.0, I've lost two stones in weight! She says they'll continue giving me the sensors whilst I'm losing weight and HBA1C is improving, as they really shouldn't be issuing it as I'm not actually eligible under NIC guidelines. She says she feels partly responsible for it getting out of control in the first place, and is using their "free" stock given by the suppliers as she can't issue to me on prescription!

Nice to finally have someone watching my back! It makes a massive difference and well worth fighting to get taken seriously by your GP practice and get someone showing an interest!

mondaytosunday · 12/10/2024 15:59

Wow. I'm type 1 and feel I'm constantly being chased by my GP. Just did my annual eye check. Did skip the foot check as I can tell the sensitivity of my feet! But I am overdue my annual HB1AC blood test. In fact I loved lockdown and not having to do that (still did the eye check though).
So I'm amazed they've gone years without these things.
And don't you need them to do your driving license every three years? Not each time but every so often the DVLA says the GP needs to see me and fill in a form.

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